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CHfather

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  1. jon' has covered the bases very nicely (as always). A doctor who thinks anyone's current cycle is going to be like their last cycle doesn't have much familiarity with CH. (I'd say the same about a doctor that doesn't prescribe oxygen.) You might benefit from getting to a headache center, if there's one near you. You might want to look at this overview, which has a lot of info about a lot of stuff, including ways to possibly stop hits without oxygen, and things you can try for shadows. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  2. There hasn't been much commentary here about "standard" HRT (hormone replacement therapy). I do remember one prominent member saying it had no effect on her CH. You can search for HRT (using "hormone replacement" as the search phrase) using the search bar at the top of each page. I know there will be a lot of comments from MoxieGirl, but her HRT was part of a male-female transition, so probably not relevant. Regarding shadows, here's a little from a post in the ClusterBuster Files. Ginger seems to be the most effective go-to for many. There is probably other advice in other posts. "Some people find that standard headache medicine such as ibuprofen helps with shadows, some find that caffeine helps (and Excedrin migraine tablets include both a headache med and caffeine), and some find that oxygen helps. Ginger seems to help many people (some also take it as a possible preventive). Tea is one way to take it. Slice or grate a bunch if it (maybe a tablespoon if grated; more if chopped) and simmer it for 10 - 20 minutes in a couple of cups of water. It should feel really strong when you drink it. You can add honey, sugar, etc. You can buy ginger tea, but make sure it’s real ginger. Crystallized ginger and real (strong) ginger candy are also good. Candy from Ginger People is strong. You can make your own crystallized ginger candy. Someone once posted “Ginger and honey on toast. Yum!” There’s apparently a Nut Bar that contains ginger and sugar. Ginger beer (non-alcoholic) has worked for some people." Can you get RC seeds (rivea corymbosa)? Legal to purchase and possess, but often very effective for busting. Are you doing the D3 regimen? As you might know, allergies (even ones you don't notice) can really kick up CH activity at unusual times. Have you tried some Benadryl? We can say more about these or other options, depending on your responses.
  3. Jeri, Batch, whose handle here is xxx, has written a lot about mast cells. (Here, for example: https://clusterbusters.org/forums/topic/9176-microdosing-to-stop-an-attack-small-piece-under-the-tongue-questions/page/2/#comment-81167). I have never paid much attention because I didn't need that much information to trust that his suggestions were going to help, as they always do. Maybe there's something here that meshes with what you have found. I can also note that several of the EDS symptoms (though not all) are also true for my daughter (who has CH). Unstable joints, bruising easily, some joint hypermobility and clicking.
  4. Prednisone works quite well to stop attacks for many people, but for most people that's only during the time that it's being taken, or even, for many, only during the time when the higher doses are taken. Some people find that if/when the attacks come back, they can be quite severe. The recommended prednisone dosage for CH is 1 mg/Kg up to 60 mg for four days tapering the dose over three weeks. If your cycle typically lasts a month and you get up to three weeks of relief, that seems possibly worth doing. Some people also get relief from the standard prednisone "dose pack," which is shorter. I don't think Emgality would be contraindicated with prednisone, but I don't really know. Reports here about Emgality are mixed, as snafu says, but you have to keep in mind that not many people are going to show up here reporting on something that worked for them. You can see comments about Emgality by putting the word Emgality into the search bar at the top right of any page.
  5. Thanks for this update, charles'. So glad that combo is working for you! Do you also have oxygen? Have you considered the D3 regimen? It would take a very long time to answer this question about those three meds individually, let alone in combination (I don't recall anyone who has taken that specific combo and only those three, but it could have happened, I suppose). Leaving side effects aside for the sake of discussion (but they can be significant), each of them has had successes and disappointments for people reporting here. If you want to see more, you could use the search bar at the top right of each page. There are not a whole lot of entries about cyproheptadine (Periactin) and not a huge number about amitriptyline (Elavil), but Verapamil is a whole other topic. Lots of people have tried it, some with very good results (often at doses that are considerably higher than what is typically prescribed). The Periactin is an antihistamine, and in the last few years, thanks mostly to Batch, it has been recognized that allergic reactions (even without symptoms) can fire up CH. Like I say, really too complex to try to discuss all this here. Have you talked to your doctor about this stop/start approach to taking the meds? I feel pretty confident that that is not really a good idea, at least with the Verapamil and probably also with the Elavil.
  6. The VNS device is gammaCore. https://www.gammacore.com/ By itself in typical circumstances, it doesn't work as well as an optimized O2 system. It supposedly has some effect when used as a preventive. I think you have to have a prescription to get it. Previously, and maybe still today, the first month was free but then $598/month after that, in the US. A 2021 evaluation within the UK National Health Service (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8611122/#:~:text=gammaCore reduces the frequency and,in the first 3 months.) "recommends routine adoption of gammaCore into the UK national health service," but presents these "key points for decision makers": gammaCore reduces the frequency and severity of cluster headaches but does not work for everyone. There is currently no evidence of a sustained long-term benefit. Treatment with gammaCore should therefore be stopped if patients do not experience any reduction in symptoms in the first 3 months. gammaCore was used alongside standard treatment, so decision makers should be aware that the possible benefits achieved with gammaCore are as a result of the addition of gammaCore to current standard treatment.
  7. It occurs to me, FWIW, that your doctor might have CH confused with the hemicranias (continua, paroxysmal), which have symptoms like CH and, indeed, most of the time do not respond to triptans.
  8. You're looking in the wrong direction.
  9. [Edit: I see that jon has just posted this same info about UpToDate .. .. ..] am not recalling the name of standard reference that physicians use...hoping another clusterhead will come along and provide. Physician's Desk Reference (PDF) perhaps? This, as all have said, is one crazy doctor. PDR, as suggested by Jeebs, might have the info that jon' mentioned (and as jon' said, any sane site will list triptans and oxygen). The most commonly used online reference/app by doctors is called UpToDate. Says here (https://nhcps.com/top-12-online-resources-for-medical-professionals/): "UpToDate is considered the go-to source for about 90% of US-based medical centers. A 118-facility study published on PubMed.gov found that most doctors and residents turned to UpToDate before any other resource."
  10. David', I don't think anyone knows for certain about either of the substances you're asking about. I think we generally suppose that gabapentin does not block busting. In some support of that, there's a post from a while back from a regular member that says: "Gabapentin works to treat my trigeminal neuralgia flare ups. Hasn't interfered with busting." I feel pretty sure that Nurtec doesn't block busting. Are you taking the gabapentin for CH? It's such an old, often ineffective, and unpopular (side effects) prescription that it feels like you could do a lot better, unless it's helping you and you aren't having significant side effects.
  11. I think it's just free to spiny, because it is covered by Medicare insurance.
  12. I know this could/should be in the "Conferences" section, but I rarely look there, so I figured I'd ask here. (Note that Bob W just posted down there that financial aid can be available!)
  13. I'd suggest you look in this file under the heading "Treatments without O2 . . . " https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ Some of the abortive strategies might help you if you need them. I would say that after caffeine/energy shots, the most effective are inhaling cold air from an air conditioning vent, or some variation of the hot water strategy (feet in it; maybe whole body in it . . . ). I'm not sure what you mean by that. If you're out of it, that's one thing. But if you feel like you can't use more than two injections in a 24-hour period, maybe you could split an injection so you're using just 2 or 3 additional mg, not the whole 6mg. https://clusterbusters.org/forums/topic/2446-extending-imitrex/
  14. The only two times in my adult life that I ate pineapple, I got severe tooth abscesses within the next few days (the only dental abscesses of my entire life)! Could have been coincidence, I suppose . . . I haven't tested to find out. I see there seem to be forms of quercetin without bromelian. This one, for example (unless bromelian is hidden in those "other ingredients," but typically it seems that bromelian is treated as a feature to be touted). https://www.lifeextension.com/vitamins-supplements/item02302/bio-quercetin?gclid=Cj0KCQjw_7KXBhCoARIsAPdPTfgzpt537enPe4CYw_HWjcfbXmIl_HfnTOXY3f3u674gC_KSZzB7k9YaAqI-EALw_wcB Since bromelian helps quercetin to be absorbed, I would imagine that maybe if you take it without bromelian, you have to pay closer attention to dosage.
  15. Parsing further, however, "stops the cluster period" doesn't necessarily mean ends the cluster period. It could just mean stops it temporarily, which is not uncommon though maybe even that doesn't happen "often" based on the definition provided. It just so happens that the very "world's leading CH expert" that I mentioned, Dr. Goadsby, did a double-blind etc. etc. study of the effectiveness of the recommended prednisone taper. You can read about it here. https://www.jwatch.org/na52979/2021/01/05/prednisone-transitional-treatment-episodic-cluster Having read that, you can explain to me what the heck it means. It mentions some people "achieving attack freedom by 7 days," but not how many, and not whether anyone's cluster period was completely ended. Overall it seems (to me) that maybe most people got significant reductions in attacks but not complete freedom from attacks. Being able to read the whole thing and not just a synopsis would probably help. And then there's this one, with a few hundred authors, that also says (I think) that pred reduced attacks but says nothing about eliminating them in the short run or fully ending the cycle. https://pubmed.ncbi.nlm.nih.gov/33245858/ Although I see here again, in this discussion of this study (https://www.reliasmedia.com/articles/147514-prednisone-vs-placebo-in-short-term-prevention-of-episodic-cluster-headaches), the unclear statement "After seven days, cluster attacks had ceased in 35% of the prednisone group." -- which of course still fails to meet the provided description of "often," and still doesn't tell us whether that cessation was temporary or cycle-ending. But I do remember, as others might, a crabby woman who wanted to take pred while she was pregnant and asked whether it would end her cycle. She was told "might stop it temporarily but probably not end it," which was very irritating to her. She mustered the energy just a few days later to tell us we were idiots because it did end her cycle, long before she could possibly have known whether her cycle had ended or not. But I am nonetheless adding her to jon''s instance and declaring that to be often.
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